How a Special Needs Mom Answers the Question, ‘What Do You Do?’

Conversation fills the air. A waitress serves appetizers on a silver platter to well-dressed guests. Soon, I’m in a conversation with someone I’ve never met when the question comes up. “What do you do?” As in, what do I do for a living? What value am I providing to society? What is my worth, net or otherwise?”

Have you been there?

Do I say I’m a special needs mother? An author? Or a blogger? Though all three are true, the majority of my time is dedicated to caring for our son. Do I recount his latest achievement of conquering crawling at 9 years old? Or how he’s just now learning to stand?

I met another mom at a baby shower recently. She shared about her son and his antics playing with the dog in the swimming pool. I listened, wondering how I could relate to her. Interrupting my thoughts, she asked if I had any children. Yes, I answered. I shared a little of my journey and received the same blank look I must have given her when listening to her story. We were both moms, but we were at opposite ends of the spectrum. Special needs mom vs. non-special needs mom.

Is her role in raising her child more valuable than me raising my child with special needs? Who knows, maybe her son will be a future president. Is there value in raising Samuel?Is my worth as a mother less because my son won’t be president, a doctor or dentist? Perhaps, yes. But it depends on how you look at it.

When watching an action movie, we find ourselves routing for the underdog, overcoming all odds to surprise the audience causing them to cheer. My hope is that my son does the same. To point to his biggest achievement of surviving a lethal form of dwarfism. To share with the world that miracles happen. Though he may not walk or talk, I choose to focus on his life, a life that inspires without saying a word or taking a step.

Over the years, I’ve received many emails from other families who found Samuel’s story on the internet. They, too, were given a negative birth diagnosis. My son inspired them to believe that nothing is impossible. That hope is a precious commodity offered in the form of a little 20-pound package. Hope, inspiration… the stuff underdogs are made of, if you ask me.

And though I might not be able to relate to a non special needs mom extolling her child’s achievements, achievements my son will never reach, I find peace knowing Samuel touches lives in unique ways. So when I’m tempted to think my journey as a mother is less than other mothers’, I need to be reminded inspiration is a great achievement. May all our lives inspire.

As I go to a wedding this weekend, I’m sure I’ll be asked what I do. I can proudly say I’m the mom of a miracle.I’m special needs mom.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why Happiness Isn’t Always a Choice

Recently after speaking at a lifestyle expo, a member of the audience asked if there was one message I would give to reduce the stigma around mental illness, what would it be?

Now I’m not known for thinking on my feet, but strangely the answer popped straight into my head: “I would like people to know, in their hearts and in their heads, that depression is not a choice.”

My quick answer was inspired by an “inspirational” post on Facebook I had commented on earlier that week. “Happiness is a choice. Every single day you make a choice,” the post said.

I disagree. And I said so. I even advised the author to think carefully about language use. (I’m sure the user was grateful for my advice — not!) A number of responses followed mine. Some agreed with me, while others asserted happiness was definitely a choice.

I don’t want to be a voice of gloom, but I do know the thoughts that tortured me. I constantly berated myself for not being happy.

I should feel happy. I should feel grateful. I should look on the bright side. The list is endless. All of these thoughts implied I have a choice and left me carrying huge guilt because I couldn’t do any of these things.

Think of it like this:

If I had a broken leg, would I be telling myself I should be able to run and jump and hop and skip? No. I would know I couldn’t. Would I feel guilty? No. Is it likely anyone would tell me if only I changed my thoughts I would be able to jump, hop and skip? I doubt it. What about if I just “cheered up?” Could I run, skip and jump then? I don’t think so.

So, what’s the difference?

The difference is some people believe it’s a choice to be depressed. There are no blood tests to confirm it. There are no X-rays to confirm it. Although I’ve been told if my brain had been scanned while I was at my worst the image “would have lit up like a Christmas tree.” Strangely, this was reassuring to me. If I had scans to show the physical “proof,” it would have helped with the guilt. How sad.

I’m sure if the general population understood depression is not a choice, there would be less stigma. Perhaps empathy would replace impatience,and understanding would replace cynicism. Education is the solution.

But there’s something that is a choice: Seeking professional help.

As hard as it is, it’s the only way to go. And, just like any other illness, the earlier we seek help, the earlier treatment can begin and the better the outcome is for everyone. Would you hesitate to seek professional help if you broke your leg? What a ridiculous question. Of course you wouldn’t. Would it be a sign of weakness? Another ridiculous question.

So be strong. Be proud. Ask for professional help. Be proud of yourself for doing so.

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Meet Vinnie Page, One of Our Mighty Special Needs Teachers of the Year

Vinnie Page is a 31-year-old teacher who grew up in Rome, New York. As a cheerleader in high school, she frequently went to events at the New York State School for the Deaf, a local school for children with hearing difficulties. Now, Page has returned to the school and teaches second grade. She has a small class with four boys.

This school year, The Mighty asked its readers to nominate a special needs teacher who made a difference in their or their loved one’s life. To nominate, they submitted an essay to us. Our staff then picked five teachers, and Page made the cut. So we reached out to her to learn more about what makes her so Mighty.

Describe the moment you knew you wanted to be a special needs educator.

I remember in elementary school we had a career day, and I always knew it was something I wanted to do. I wanted to teach. I think I really knew I wanted to be in special education when I was in middle school. I knew then that was my passion.

How do you communicate with students?

I teach students who have cochlear implants and hearing aids. I use voice and sign language all day, and I use a voice amplification system. It’s a piece I wear around my neck, and it has surround sound throughout the classroom. We do a lot of visual, hands-on things, whether it be on the promethean board or other technology like laptops or iPads. I use a lot of visual manipulatives.

Students using technology in Vinnie’s classroom

What specific technology do you use? It’s similar to a SMART board, but it’s a promethean board. It’s an interactive white board. It’s really neat. I can display anything from my computer screen onto it. The kids can actively use it up on the board as opposed to sitting in front of the computer. It’s a huge motivational piece to not have to sit. They want to interact.

What advice would you give someone who’s just starting out as a special needs teacher? Your former self?

The biggest thing I stick by and the one thing I think is most important for myself and my students is building a relationship with them. A key factor is being able to relate to your students and build some sort of a relationship other than just being their teacher. I give my kids a hug every day when then leave and every morning when they arrive. We talk about what they did the night before. It lets them know you care and that you’re there for them.

Describe a moment when you were satisfied with your job.

Always. I love what I do. I love my kids. I love the people I work with. I feel so blessed to be working where I am. I’m thankful every day because I enjoy everyone. All the students, all the staff. I’m just fortunate. Knowing the kids come in with a smile and that they want to be here, that just makes my day.

If you had a $1,000 grant for your classroom, what would you buy?

Any sort of technology, like interactive tables.

What can parents of special needs children do to ensure their child gets the most out of school?

Being a part of every aspect of their education. Being involved and making sure they’re getting what they need. That’s important. Educators want parents to be involved.

What’s one way you make learning fun for your students?

Asking them their opinions and ideas so they feel like they have a part in deciding.

What’s the most memorable thing either a student or a parent has said to you?

Students telling me how much they love me and that they love coming to school. I actually had a student write to me, “Thank you so much for giving me a second chance.”

How do you motivate a reluctant learner?

By taking something of interest to them and turning that into a lesson. For example, I have a student who loves Mario and Luigi. We were trying to learn some vocabulary words the other day and we were talking about heroes. He just wasn’t interested at all so I said, “OK, how about Mario and Luigi? Who do they save?” And he said, “Oh the princess, and I said, ‘He’s kind of like a hero, he saves her.'”

What’s the most rewarding part of your job? Being able to work here every day with these kids. They’re awesome.

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5 Ways Employers and Businesses Can Become More Autism-Friendly

How can employers and businesses become more autism-friendly? I thought about this after the human resources department at the hospital I work at failed to post a reminder for due dates for their CPR and Non-Violent Crisis Intervention (NVCI) training. HR used to remind hospital staff of the due date. But this past year, I was late on my NVCI because HR didn’t send out a reminder.

I received a final written warning because my NVCI had expired. I met with the new director of human resources and explained to her how autism causes me to follow set patterns, and how HR in the past informed me of my due dates. The new HR director looked at me and said, “Is it safe for a person with autism to be working in a hospital with patients? I’ll have to inform the director of nursing that you have autism.”

I was furious and I felt totally humiliated, but with full restraint, I held back my tears. When I was hired seven years earlier, I informed the HR director and my supervisors about my Asperger’s and turned in documentation on my disabilities. Instead of transforming into a honey badger, I gently educated her on autism and explained my mind’s unique neurological processing system.

So how can businesses become more autism-friendly? For the answer to this question, I interviewed Dr. Donna Beegle, whose daughter, Juliette, has nonverbal autism. They were escorted from a United Airlines flight in May after their plane made an emergency landing in Salt Lake City due to a passenger with “behavior issues,” news outlets reported. I also received feedback from my Facebook friends who have children with autism and researched books and articles about autism.

2. Ask the person with autism, parents or caregiver how you can best offer accommodations for their needs.

Dr. Beegle shared, “We always carry a travel go-bag for Juliette, but on this occasion after a rough day, she needed warm food to soothe her. A little warm rice is all it took.”

3. See the individual with autism as a person. Get to know him or her.

Jerry Newport, author of “Your Life is Not a Label,” wrote, “I know of nobody who is purely autistic or purely neurotypical. Even God had some autistic moments, which is why the planets all spin.”

Also, the articles on Juliette failed to personalize her by telling readers of her love for Disneyland and her musical talent. Dr. Beegle stated, “Juliette loves to hug random people in the mall. She hugged an elderly woman, and the woman joyfully responded, ‘I just received a hug from God.'”

4. Have compassion for the family and child with autism.

Traveling and shopping can be extremely difficult for both the parents of a child with a disability and for the child. “Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean,” Carrie Cariello wrote on The Mighty. “You just keep your fingers crossed that your child can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns and anxiety.”

5. Use universal precautions with all people — not only those with visible or physical disabilities.

Universal precaution is an approach used in regard to infection control to treat all human blood and human body fluids as if they were known to be infectious. Businesses can use universal precautions by treating every customer or employee as if he or she might have a hyper- or hypo-sensitivty to sound, light, touch or taste.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Nurse Who Asked, ‘What Happened to Her Face?’

“What happened to her face?” I heard you ask — and not in a friendly tone.

Still groggy after the procedure to help with my neck pain (I was in a car accident two years ago), I briefly opened my eyes. I was still in the procedure room and your team had just adjusted me from my stomach and returned me to rest on my back. The anesthesia I’d been under was wearing off in a record time.

Closing my eyes, I thought, “Did I just dream the nurse’s question? I must have.” But it my gut, I knew it hadn’t been a dream. As I woke up, I became more confident in what I heard you say, and it made me feel terrible. One of the anesthesiologists who was also in the room confirmed I heard her correctly.

“Oh,” I told him, “you can tell her it’s just a birthmark. I don’t mind people knowing what it is. I actually write about my birthmark and story on my blog, and I’m a public speaker on the issue.”

My heart felt heavy. I felt frustrated. I was hurt. I was tired.

Today, a week later, I finally talked directly to your manager. I told her I was hurt and frustrated, and I was there for my neck — not my face. Your words, and the attitude in your tone, were not the first things I wanted to hear after a painful procedure. In fact, that’s the last thing I wanted to hear. She understood and was equally disappointed in the situation.

She explained to me that when I entered the room to have my procedure, I had one nurse I met beforehand. When the procedure was finished and I was prepping to leave the room, I had a different nurse due to a shift change. I had you. You had no way to know when they turned me from my stomach and onto my back, my face wouldn’t be the norm. You didn’t see much about my file beforehand, nor were you informed about any medical conditions that I have. You went in blind, without any “warning” about my face.

I’m guessing you probably thought I was still asleep. You probably thought I wouldn’t hear your words, I wouldn’t remember them. But I was awake. I do remember.

It’s possible you meant your question, “What happened to her face?” to translate to, “Is she OK? Is she having some kind of reaction?” But it didn’t. Not with your choice of words and the tone of your voice. Instead, it translated to an unprofessional, careless attitude and sounded as though you were just being nosey.

You’re not the only one to choose the wrong words on occasion. I’ve been asked if my birthmark was face paint and an allergic reaction to the flu shot. During one hospitalization, another nurse (while I was awake) rudely asked my attending nurse, “What happened to her face?!” When I started to react, she pretended like I wasn’t awake and sitting in front of her when she continued to ask my attending nurse, “Oh, is it something she’s had for a while?” She never addressed me. She never talked to me. I was invisible.

A few weeks later, during a time when I was incredibly sick, a receptionist recommended I switch makeup brands so I can hide my birthmark better since “it probably bothers other people more than it bothers you.”

That’s just in hospital settings alone. I’m excluding experiences at the dentist’s office, at college, online, and when I’m out with friends. Knowing the words that have been said about me and to me while awake, I don’t want to know what may be said about me behind closed doors — or when I’m asleep having my gallbladder removed or during a third ankle surgery.

Your words hurt, but they inspired me. That’s why you’ll probably see me again in your department in the weeks to come. This time, I’ll be there for a different reason: To talk about my story, to explain situations I’ve been in and why my experiences are not OK and why. I’ll be teaching you and your coworkers better responses and friendlier ways to address certain issues. I’ll also be reminding you I’m more than just another patient, I’m also human — just like you. And just like you, I have a story. I have feelings. I’m more then whatever “happened to” my face.

Please know, though, I won’t single you out. In fact, I don’t even remember who you are. Although I blog about my experiences, I probably wouldn’t be able to recognize the people who created the experiences. I strive to remember the situations, the stories, the quotes — but work equally as hard to forget who said it. Who said it doesn’t matter, what was said does. Your ability to grow and learn matters even more.

You’re not the first person to say hurtful words. You’re not the last. But you can learn. I can’t change my appearance, but you can change the way you handle situations, your attitude, and the words you choose. You can remember all your patients are more than just an ID number waiting to be “serviced.” You can remember patients aren’t always asleep, regardless if their eyes are closed.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded.If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

This Adorable Photo Is Crushing a Stereotype About Tic Disorders

Lora Scantling and her 6-year-old daughter, Camdyn, live in Yukon, Oklahoma. Earlier this year, Scantling noticed her daughter consistently coughing and clearing her throat, even though she wasn’t sick. In June, a neurologist diagnosed her with chronic motor tic disorder, a condition characterized by quick, recurring movements or vocalizations.

It differs from Tourette syndrome, which includes both motor and vocal tics. Scantling told The Mighty she frequently sees people confuse the two and assume anyone who has a tic disorder also lives with coprolalia, the uncontrollable use of obscene language and a common symptom of Tourette syndrome.

“Whenever I tell people about [Camdyn’s] disorder, about half of them ask me if she cusses,” Scantling wrote in a post accompanying the photo above. “She and I together are making a big push to help educate others.”

Scantling says she hopes her project will help people to understand and respect those who live with tic disorders, whether they are extreme or mild.

“Just like with autism, tic disorders are a spectrum disorder, meaning there are many different levels,” Scantling told The Mighty in an email. “I hope this helps others become more aware and for [tic disorders] to become more accepted, whether the person who has it is cussing or just grunting. Don’t make them feel bad for something they cant help.”